New To Forum - Revision needed?

[LindaRacine]

Linda had a "Should I Have Scoliosis Surgery" test years ago on her website.

I remembered that I had an old hard drive with my ScoliosisLinks files on it, and I managed to find the drive. I have no way of putting it up on the web now, but I'm happy to send it to anyone who'd like it. It's a bit dated, but it still serves the purpose of making people think about many of the important elements of making the surgery decision.

If you'd like a PDF of the file, send me a PM with your email address.

--Linda

[Tina_R]

I think mostly because he does everything he can to secure a good outcome. He knows that many patients are unhappy with their inflexibility.

When I talk about my own inflexibility, I always say I'm unhappy with my restrictions. It's really important to understand that doesn't mean I made the wrong decision. Because of really bad leg pain, I could only stand for a minute or two before my revision surgery. So, although I hate that inflexibility, I'd actually still make the same decision to have surgery. While I have several functional issues, I can at least stand, and I no longer have lower back pain. For many of us, it's all a tradeoff. The best advice I can give you is to not expect perfect. It rarely happens.

--Linda

But why the lumbar? Is the inflexibility of the lumbar harder to deal with than that of the thorax? Or is that a matter of personal preference -- which activities would you or I miss the most that are now compromised?

[jackieg412]

It is the area of the lumber that we have most of our movement. The thoracic spine doesn't by nature move that much. The ribs kind of keep it still.
The one thing I find hardest is picking something small off of the floor . If I don't get all the way down, My arms aren't long enough to reach the floor.

[LindaRacine]

But why the lumbar? Is the inflexibility of the lumbar harder to deal with than that of the thorax? Or is that a matter of personal preference -- which activities would you or I miss the most that are now compromised?

Yup, what Jackie said.

[LindaRacine]

It is the area of the lumber that we have most of our movement. The thoracic spine doesn't by nature move that much. The ribs kind of keep it still.
The one thing I find hardest is picking something small off of the floor . If I don't get all the way down, My arms aren't long enough to reach the floor.

I have very long fingers, so I have a tiny advantage. Every time I think of that, I’m reminded of all the times I dropped a pen or a piece of paper in meetings with a bunch of spine surgeons. They were typically very interested in seeing if I was successful picking the object up. For the most part, if they were close enough to me, they would usually jump up to help me out.

[Tina_R]

Yup, what Jackie said.

Even if it doesn't include fusing the sacrum?

[LindaRacine]

Even if it doesn't include fusing the sacrum?

Yes. Unless you're a contortionist, there is relatively little motion in the thoracic spine. Here's an xray that demonstrates where reverse bending comes from:
Spine Bent Backward
And, here's an illustration of a spine bending forward:
Spine Bent Forward

[JScoli91]

Is it then inappropriate for someone as young as myself (28) to have their entire lumbar fused irrigardless of pain even if we knew the curve and/or deterioration would increase? If this type of procedure is in my future eventually anyway is it better to accept the resulting limitations now for the rest of my life to avoid increasing pain in the future, increasing deterioration, etc.?

[LindaRacine]

Is it then inappropriate for someone as young as myself (28) to have their entire lumbar fused irrigardless of pain even if we knew the curve and/or deterioration would increase? If this type of procedure is in my future eventually anyway is it better to accept the resulting limitations now for the rest of my life to avoid increasing pain in the future, increasing deterioration, etc.?

Sorry, no one can make that decision for you. You now have all the info regarding pros and cons, and only you know how debilitating your pain is, and whether you can delay the bigger surgery.

--Linda

[JScoli91]

I’m sorry Linda if I have been a pest or annoying. I know nobody can make the decision for me, I guess I just wish there was either validation or rejection of the part of me that feels “no the vast majority of my pain isn’t truly debilitating, but if the larger fusion is going to happen no matter what, I would rather get all the hurting and pain and risks of surgery done with all in one go instead of taking the piecemeal approach.”

[Pooka1]

If the surgeon has some reason to believe just fusing L5-S1 can buy you time then I think you should consult the tethering surgeons about whether you are a candidate in order to buy more time until the rest of your lumbar needs fusing by creating a better alignment.

The problem though is the unknown unknowns given only a handful of adults in your age category have been tethered and almost certainly none of them are patients with a T fusion plus an L5-S1 fusion. But it wouldn't hurt to ask them to speculate.

The other problem is I don't know whether the adults being tethered are being tethered for progression or pain. If just for progression, it may not address pain.

[titaniumed]

I guess I just wish there was either validation or rejection of the part of me that feels “no the vast majority of my pain isn’t truly debilitating, but if the larger fusion is going to happen no matter what, I would rather get all the hurting and pain and risks of surgery done with all in one go instead of taking the piecemeal approach.”

I can understand this.... Actually, there was no doubt that the works had to be fused in my case. I was also age 49 and I knew I had to get things done....The thing is that you are 28. I dont think there are many stacked ALIF patients that young.... The stacked ALIF addresses the front, and the back, gives room to get in from the front and clear out all the disc material around the cord, partial corpectomy, bone spurs, etc. Its the full engine re-build. Its also a strong fusion as it fuses front and back. There has to be some sort of advantage over TLIF even if Dr Lenke doesnt do them. Thats the big question I would have for Dr Lenke. In my case it solved all the problems. I do not think I will ever have any more lumbar problems ever.

The pain can be fought. I did that, it was a 6-1/2 year battle and it was also expensive. Very expensive. You boil in a hot tub, do a 2 hour massage, get out of pain, pay the bill, get in your car and 4 seconds later its BACK like a light switch. On or off. And then you have to drive home. I drove fast in those days.......This didnt happen much, but these kinds of events solidify the pain decision. At the end of my 6-1/2 years battle, my efforts at pain control were not too effective. I had less and less success with non-surgical methods. I was also about 10 years too late on my surgeries.

I "do" have the comedic answer for your wiping question....Sometimes the comedic answer is truly called for. I was going to say I have long arms, and that "long reach" is needed, but Linda has long fingers so now I have to re-think the joke. Ha ha If we took a long 3 hour walk, 1 hour of the walk would be jokes. Learn to joke, it keeps you sane.

With all these questions, there are answers, but if you are going to walk in, you cant be worrying about too many specifics. I do not keep looking up at the sky looking for asteriods to destroy the planet. I also did not worry about aorta and vena cava ruptures. All the Male related ALIF complications did not happen to me.....The plumbing works fine. Fine and dandy. Well.....maybe not overly dandy. Fine on Monday, Dandy on Tuesday. What the heck is dandy? (smiley face)

Peripheral nerves heal....
https://en.wikipedia.org/wiki/Peripheral_nervous_system

Linda, my e-mail is my username using a hotmail account. That test is great. We should post it with the description in the title for future searches. Searching around here can take a whole bunch of time, for sure. The search words or keywords have to be right.

It would be nice to have an answer on the lumbar tethering question. The one thing about tethering the lumbar is the forces. They are MUCH higher in the lumbar. I dont know if a double tether would work, or if its feasable with degenerative conditions...??? Or multiple degenerative condition on multiple levels? The articulation figures in the Moe handbook state the highest values for lumbar. Roughly 25 dergees per lumbar level. Hard to believe but true. Look at contortionist's and what they do and you can see.

Ed

[LindaRacine]

I’m sorry Linda if I have been a pest or annoying. I know nobody can make the decision for me, I guess I just wish there was either validation or rejection of the part of me that feels “no the vast majority of my pain isn’t truly debilitating, but if the larger fusion is going to happen no matter what, I would rather get all the hurting and pain and risks of surgery done with all in one go instead of taking the piecemeal approach.”

Sorry, I didn't mean to imply you were a pest or annoying. I tend to be short and honest, at least at times.

Whatever you decide, there's no rush. If I were you, I'd take a little time to ruminate on all I'd learned. It really is your decision. I would try not to let others opinions have any effect on what you decide. Even your family. Perhaps it would be good to start a list of pros and cons, to see if one decision makes a lot more sense than the other.

--Linda

[JScoli91]

Linda, I have been meaning to do a pros/cons list for both options but with running around after a 2 year old, making sure he doesn’t accidentally maim the 6 month old, AND run a dairy farm, a pros/cons list ends up on the back burner pretty quick especially when I’m exhausted and in pain at the end of the day. I really need to do it though, get it all down on paper and add to it as I continue to think about things. That way when i revisit the topic I don’t have to rehash what I already have listed out on either side.

I guess it’s the finality of fusion that is the scariest for me. The thought that I could potentially make the decision of a full fusion which makes sense to me before having it done and the fear that I would come out of it on the other side wishing I hadn’t done it but not able to go back...would there be an easier or less-difficult way to take a poll of some kind as to how old or young people have been when they have had a full fusion? Could I also get your questionnaire?

[JScoli91]

We just got done with a second opinion by Dr. Bransford at UW Medicine Harborview Spine Center in Seattle. After talking with him it doesn’t sound like it’s the progression of the lumbar curve that concerns him as much as the rotation of the individual vertebrae. He does not see this ceasing in the absence of fusion.

He said that if we are to go down the road of revision surgery it would have to be for the entire lumbar and that fusion of just L5-S1 is not sustainable and would not bode well for other vertebrae. I asked him if he were to perform the surgery what his method would be and he said he would do everything in one table session providing minimal blood loss etc. (the first surgeon said 2 separate procedures), he would only replace L4-L5 disc and L5-S1 disc anteriorly (first surgeon said all lumbar discs) and the fuse with rods from T10-S1 posterior (first surgeon said T12-S1) and then SI fixation.

I guess now it’s a matter of the mathematical equation of when it’s good for me, our kids (2 and 7 months), work (family dairy farm), etc. I know for sure I want to be through the meat of recovery by the time our kids have their birthdays (May and June) and if I were to press the go pedal on surgery now the second surgeon said he would have me in by the end of February.